Life with a Food Intolerance

Until you are in a situation where dietary restrictions affect your family, it is very difficult to imagine the amount of life-long adaptations and daily considerations that come with the territory.

To say Maddie’s fructose intolerance was a “game changer” is an understatement; her diagnosis 2.5 years ago had nearly as large an impact on our family and daily lives as her birth 3 years ago.

It has changed practical, everyday things like what food we buy, what we choose to eat and going out to dinner.

It has changed our social habits and family time, too.

No random ice cream trips on hot summer nights.

No cookies nor candy treats.

Not even any birthday cake.

We’ve grown accustomed to bringing along our own food wherever we go. We’ve found it easiest to provide the snacks she’s given at preschool and feel lucky to have found a particular brand of cookies that are made with a sweetener she can reasonably tolerate.

Dealing with any type of food intolerance or allergy in your family falls anywhere from Inconvenient at Best to Downright Terrifying if your child’s allergy could result in death. Maddie’s issue is not a fatal one, though its uncommon nature makes for a different set of challenges.

Many people have never even heard the term “fructose” before, let alone have an awareness that others can be sensitive to it or the incredible number of foods that contain HFCS or other artificial sweeteners (This is not limited to obviously-sweet foods either. I can’t think of a blander food item that Saltines crackers and even they contain HFCS).

If Maddie’s sensitivity was to a more common food, it would be a lot easier to ask questions of a party hostess or waiter, or quickly find allergy information on packaged foods. But it is what it is, and this is our reality.

We’ve managed to successfully cross each hurdle as it’s been presented to us. Maddie is now 3 and we’ve tackled everything up to and including preschool snacks, potty training rewards, Halloween, and birthday parties.

Our next task?

Eating out.

Maddie has reached an age where she can make the connection between the foods she eats and the pain in her belly. This is both a blessing as well as a curse because her ability to make that connection – and then articulate it to me – means my heart sinks a bit each time she tells me that some food I thought was OK for her, turns out to have been causing her pain.

I’m not comfortable with the frequency I’ve been hearing this from her recently and now I’m worried my baby has had a belly ache more often than not during her 3 years on this Earth.

And to make matters worse?

The only way to know if a certain menu item is safe for “Maddie consumption” is to let her give it a try.

Making the decision to take that gamble never gets any easier.

Maddie

 

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86 Responses to Life with a Food Intolerance
  1. Alison@Mama Wants This
    September 19, 2011 | 6:11 am

    That is a tough thing to live with. And almost everything has fructose in it, doesn’t it? She’s a brave, brave girl.

  2. Barbara
    September 19, 2011 | 6:24 am

    Poor thing! I can’t even imagine how hard it must be to try and figure out what foods she will have a reaction to. I hope it gets easier for her!

    • Liz
      September 20, 2011 | 8:34 am

      It’s both easier and harder. I like that she can tell me but the older she gets, the more worried I am that she’ll begin to feel left out.

  3. Jenny
    September 19, 2011 | 6:42 am

    Wow…That is just awful to deal with. And you are right, it defintiely does change a family dynamic with an allergry like that. Do they think that she will grow out of it or is it something that she will have to live with?
    It does sound like you guys as a family have a good handle on it.

    • Liz
      September 20, 2011 | 8:35 am

      I don’t know and there’s no real way to know. Just knowing older kids who have an allergy…some have had good luck with lessening sensitivity as they’ve aged and others haven’t.

  4. Ila East
    September 19, 2011 | 6:47 am

    I have 12 food allergies although none of them are severe, they just make my nose run. One is corn, which seems to be in most foods in one form or another so I understand having to read labels. If my allergies brought on stomach pains I sure would be careful what I eat too.

    It’s good that she has connected stomach pain with the food. It’s not fun to hurt, but she will have immediate feedback if something isn’t safe for her to eat.

    • Liz
      September 20, 2011 | 8:37 am

      Wow, runny nose allergies. That’s kinda crazy! But I guess it’s good that your symptoms are mild.

  5. Galit Breen
    September 19, 2011 | 7:13 am

    Oh my, Liz- this is important. And heart wrenching. I’m glad that you shared more of your story about this. I know how passionate you are about this topic. Now I understand more why,

  6. Kmama
    September 19, 2011 | 7:16 am

    As a mother to a child with multiple food allergies, I understand. When Buddy was first diagnosed with food allergies, he tested positive for over 20 foods. It completely derailed our life as we knew it. When his egg allergy was bad, we had to avoid all baked goods, and that was HARD. Things have gotten better for him, and we’ve slowly been able to reintroduce items that he used to be unable to eat. Peanuts, tree nuts, and sesame remain on his “severely allergic” list though, and that makes eating out a calculated risk every single time. Thankfully, he’s never had a life threatening reaction.

    I hope that the process of learning which items she can eat goes as smoothly as possible.

    • Liz
      September 20, 2011 | 8:38 am

      Venturing out of the house is definitely a whole new level of difficulty, isn’t it? It’s much easier to adapt at home, with your immediate family.

      Good luck with Buddy’s nut allergies!

  7. Alison at Mommy is a Power Ranger
    September 19, 2011 | 7:33 am

    I can relate to what you are going through. My youngest son has multiple food intolerances, mostly to fruit. If he eats even a tiny bite, he gets horrible eczema all over his cheeks and chin that bleeds. At this point, since he just turned 1, we’re not yet sure if it causes him any internal discomfort or not. I feel horrible that your daughter has to try the foods and feel the pain to know if she can eat them or not. Thank you for sharing your story-it really makes me feel less alone as a mom, especially since the foods my son can’t eat are not the usual suspects.

    • Liz
      September 20, 2011 | 8:41 am

      I think that’s a unique challenge for moms like you and me. When people aren’t aware or understanding of what it is that makes our kids sick, it adds an extra layer of difficulty.

      Maddie can have some fruits but not a lot. And no fruit juice. We stick to things like granny smith apples. They aren’t nearly as sugary/fructosey as other varieties.

  8. Evonne
    September 19, 2011 | 7:56 am

    That is tough. It’s good she is starting to recognize what she can or can’t eat, but I understand how hard that can be for you.

    My son had a sensitivity to dairy, I think. We never exactly pinpointed what set him off. He’s better that he used to be, but we still watch what and how much he eats when it comes to dairy. It can be hard to change the way you do things. It’s also hard to explain to people why your child can’t have that piece of cake at their friend’s birthday party.

    • Liz
      September 20, 2011 | 8:42 am

      I also get the, “But if it’s made with real sugar” question. But even though it’s real, sugar is pretty much either ingredient number 1 or 2 in any type of dessert, so the sheer quantity of it is too much for her to handle.

  9. Julia
    September 19, 2011 | 8:01 am

    I know how challenging this can be, having friends with kids who have food sensitivities. It takes a lot of vigilance and, I’m sure, worry. Thank you for the important reminder to all of us to be more aware of others’ sensitivities but also to watch for them in our family.

    • Liz
      September 20, 2011 | 8:42 am

      You’re so sweet, Julia! Thank you.

  10. KLZ
    September 19, 2011 | 8:04 am

    This makes me terribly, terribly glad that I never cave to my desire to send you guys cookies.

  11. Rachel {at} Mommy Needs a Vacation
    September 19, 2011 | 8:07 am

    What a tough thing to live with! I hope it gets easier for her (and you!)

  12. Ali
    September 19, 2011 | 8:08 am

    Poor baby. That has to be so tough. I’ve actually never heard of an intolerance to that. I’m glad you learned about it early though. I wonder if its something she can grow out of?

    • Liz
      September 20, 2011 | 5:13 pm

      I really hope so! No one really knows.

  13. Amy
    September 19, 2011 | 8:09 am

    Ahhh, sweet girl! She will be so much healthier in the long-run by avoiding all HFCS, but what an absolute nightmare!

  14. Jackie
    September 19, 2011 | 8:16 am

    Poor kid! What a tough allergy to deal with!

    I’ve been fairly lucky with the fact that none of my kids have an allergy to food or anything like that. But I can’t imagine the amount of work & worry that a parent would go through on a daily basis because of one.

    Best of luck to you & Maddie! And hopefully it’ll be something that she’ll grow out of.

  15. Living the Balanced Life
    September 19, 2011 | 8:35 am

    I knew you were against HFCS, but I never realized it was because of an allergy/sensitivity. Since fructose is the natural sugar in fruit, can she eat fruit? I thought for a 2 weeks I may have had a wheat allergy and that was difficult to think of how I would live that way. My hats off to you, but of course we will do whatever it takes to take care of our children. It is good now that she “can” tell you what is causing her pain.
    Bernice

    • Liz
      September 19, 2011 | 8:43 am

      Only some “naturally occurring” fructose. Fruits that are too sweet she can’t tolerate even though it’s natural. She’s OK with granny smith apples, for example, because they are tart more than sweet. But many other apple varieties are too much for her to handle.

  16. Jill
    September 19, 2011 | 9:03 am

    Oh wow! This IS a game changer, Liz… especially tough for mama.

  17. Sara Grambusch
    September 19, 2011 | 9:12 am

    That is a particularly rough intolerance to have and it’s difficult when children have any serious hurdle in their short lives. It sounds like you’re doing a great job talking to her about it. I think the most important part is that she understands and doesn’t develop irrational anxiety about it and connect it to her relationship with food in general. Thank you for sharing.

    • Liz
      September 19, 2011 | 10:08 am

      I feel very lucky that she’s pretty understanding with it all, even at 3. She sees kids eat candy and desserts, and she will tell you that it will make her sick and that she needs her special cookies.

      But then random things like ranch dressing or Chick-Fil-A breakfast potatoes hurt her, too. It’s just so hard to know – when we aren’t making it at home ourselves – what is going to make her sick.

  18. Kimberly
    September 19, 2011 | 9:16 am

    That has to be so hard momma. You’re doing everything in your power to protect her. I imagine it’s a lot of trial and error but I think that comes with the territory of a food intolerance. It’s not like you are purposefully intending to make her hurt.
    You’re doing everything right.
    Hugs to sweet Maddie

  19. Grumpy Grateful Mom
    September 19, 2011 | 9:52 am

    What a little cutie she is! I can see how having an allergy to something unique would be so difficult, for you too! I know someone who is allergic to apples, but fructose is in everything. So, hoping this gets better for your daughter.

  20. Alexandra
    September 19, 2011 | 9:53 am

    I have never thought to blog about this, I’m not sure why.

    I think , maybe, because my kids are older, and I don’t want them to feel that they cause me any stress.

    I’m not saying you have done this here, but, I just don’t want them to think it’s hard.

    Even though is is DAMN hard.

    I hear you: we have peanut, dairy, egg, beef, shellfish, and legume allergy: no beans, no seeds, no candies, no restaurants.

    And now, I have to worry: about kissing on dates, my two are almost 15, almost 17.

    I have begged them to ask the girls to NOT eat peanut candy, or peanut nougat, or peanut butter the whole day before.

    i can’t tell you how I jump when they’re out if the phone rings and my mind goes to Peanut Exposure.

    I can’t tell you.

    It IS hard.

    It DOES change your life.

    And it breaks my heart when I see my kids tell me, “mom, it’s so hard.”

    I know it is, boys, I KNOW IT IS.

    Thank you for this post: though misery doesn’t love company, someone in my shoes lightens my load.

    Thank you, Liz.

    • Liz
      September 19, 2011 | 10:15 am

      I can’t imagine living with peanut allergy. I feel so bad for Maddie, but our worst case scenario is belly pain and diarrhea.

      In the stage where they are budding adults, wanting to do their own thing, you can only hope that they realize how serious the threat of peanuts are to them.

  21. Lisa
    September 19, 2011 | 8:57 am

    Does she have hereditary fructose intolerance, or dietary fructose intolerance? I’m just curious because I have dietary fructose intolerance and am always interested to find someone else :) I think it is way more common than we know (or the “powers that be” in the food industry want to admit?), but I rarely hear people talk about it.

    HFCS is the worst for me, something about the way glucose and fructose are packaged together. Avoiding it is a pain, but I have the best luck avoiding chain restaurants. It seems like they use the most pre-packaged, processed foods.

    I want to throw something at the TV every time I see that commercial that says HFCS is just like sugar. It is NOT just like sugar!

    • Liz
      September 19, 2011 | 10:25 am

      I don’t really know. This was diagnosed when she was around 5 months old, so there were some big limitations to fully understanding the “whats” and “whys” of it all.

      She never gets juice as we’ve been told the process of turning fruit into juice basically bastardizes it. :) She can tolerate some natural fructose (for example, Granny Smith apples but other types. Less sugar/fructose in Granny Smiths due to the tart nature) but even with fruit we’re pretty limited.

      I was just reading yesterday how there is some research that suggests IBS is tied to fructose intolerance, and I was diagnosed with IBS while in college. Now I’m wondering if she “inherited” her issue from me?

      I cannot stand watching those misleading “sugar is the same as HFCS” commercials either. In fact, I just ripped out an article about how diet sodas are making people fat. Our bodies simply do not know what to do with all the fake sweeteners and we’re all paying the price for it.

      Thanks so much for your comment!

  22. Dana K
    September 19, 2011 | 10:11 am

    Oh, wow, Liz. I’m so sorry y’all have to deal with this. We have to limit Klaw to 6g of fat a day due to his disorder. It’s so incredibly hard. It’s hard when every restaurant visit becomes an interrogation of the wait staff about exactly what is in a dish. We aren’t even at the point where I have to worry about snacks at school, but I’m already thinking about it. Stuff like this consumes your life.

    • Liz
      September 19, 2011 | 10:16 am

      And seeing what they offer Kate? I don’t know what we’re going to do come Kindy! They give kids candy every 5 days for good behavior. The teacher keeps a treat jar in her classroom for other positive reinforcement. And then “celebrations” for fundraising efforts, etc., are parties like ice cream socials. Maddie cannot and will not ever be able to take part or accept any of that.

      I don’t want her to start feeling like she is the outsider, ya know?

  23. Carri
    September 19, 2011 | 10:33 am

    Poor little thing. :( I’m sorry she (and you) have to go through this. It must be so hard to be a little kid at a birthday party, not able to eat cake.

  24. Natalie
    September 19, 2011 | 10:43 am

    Awww poor little girl! I can’t imagine how tough that must be. Sounds like you’ve really worked out a system though.

  25. Maureen | Tatter Scoops
    September 19, 2011 | 11:06 am

    Liz, I’m so sorry for you all but you blogging about it sheds some lights and understanding to those who doesn’t understand what it’s all about – myself included! Thank you for this post.

  26. angela
    September 19, 2011 | 11:35 am

    Oh Liz, That’s so tough. I thought it was tough with peanuts, but at least with that, I think there is heightened awareness. You wield an epi-pen, and you get some attention at least :( Even just the peanuts make me a little sad, though. I hear other parents talking about it being such a hassle to have to worry about the snacks or things like that (there is a child at Abbey’s school with a life-threatening latex allergy,) and my heart hurts that these adults are categorizing the kids like that :(

    I saw your comment that there is a link to IBS. I have some diagnosed IBS issues; I will make a conscious effort to limit fructose and see if it makes a difference.

  27. Devan @ Accustomed Chaos
    September 19, 2011 | 11:49 am

    I can SO SO SO relate to this. I’m currently fretting in terror of sending Princess R to school – she starts tomorrow. Fear of all the lunches, the play-doh, envelope glue…. gluten is everywhere.

    & it is even more terrifying when people can’t seem to grasp or understand the seriousness of it.

    hugs mama

  28. Krissy @ Mommy Misc
    September 19, 2011 | 12:11 pm

    Oh wow, that must be very hard to deal with as a mom. Most things have fructose in it, but I’m glad you’re finding things that would work for her! Sadly, trial and error is the only way to go in most cases. I’m sure she understands that even though moms are super moms, we don’t know everything and sometimes we have to try things that may not be completely comfortable for her belly. :( Is there anything that they can give her once a food does start to irritate her belly? I feel so bad for you and your little girl.

    I’m a new follower to your blog. If you could follow me back that would be great. :)

    Mommy Miscellaneous Blog

  29. Amanda Austin
    September 19, 2011 | 12:23 pm

    Gosh, I can’t even imagine, Liz. Poor little lady! I’m sure it was so much worse just trying to get her to understand when she was younger. It’s a blessing that she seems to understand and (so far) isn’t phased by it (as in, feeling left out)…I feel for you guys!

  30. JamieAnne
    September 19, 2011 | 12:39 pm

    Poor sweet little lady! That has got to be rough. You’re right, as a parent of food allergy free kids, I can sympathize but I can not truly understand. I feel for you guys! I can imagine it’s a rough thing to deal with. We have a friend with nut and fish allergies and I stress out when they eat at our house. Just trying not to forget any of the allergies is pretty stressful.
    Hugs to you!

  31. Megan (Best of Fates)
    September 19, 2011 | 12:42 pm

    That sucks. My best friend Skye is a vegetarian who is allergic to all nuts (which, yes, is super weird because they’re not related to each other, but yes, each and every nut gives her an allergy) and her doctor just told her she now can’t eat citrus (except lime, so… yay?) wheat or soy.

    It’s tough times ’round here. But it crazy sucks you have to let her try the food to find out if it’s bad – as in, do some products have secret fructose in them?!?

    • Liz
      September 20, 2011 | 5:15 pm

      Is her vegetarianism why she posed so well with seaweed?

  32. JDaniel4's Mom
    September 19, 2011 | 12:42 pm

    This must we so hard. So many foods frutose. I am glad she is old enough to communicate that certain foods hurt her tummy.

  33. Leighann
    September 19, 2011 | 12:52 pm

    Oh that is so heartbreaking.
    Having any type of alergy or reaction and knowing that your child hurts is painful.
    Your struggle sounds like a challenge.
    YOU are strong though, and your daughter will get this from you.
    Thinking of you. xo

  34. varunner7
    September 19, 2011 | 1:32 pm

    Is there a chance her tolerance will increase some with age? I hope it gets easier for her (and you!) with time.

    • Liz
      September 20, 2011 | 5:15 pm

      I don’t know, honestly. I would love it, but I don’t know that she’ll ever be able to have a slice of cake.

  35. Amy Mac
    September 19, 2011 | 1:34 pm

    Wow, this must be so tough! Poor baby girl! My baby boy is approaching 6 months old and I’m a little nervous about starting him on solids because of potential food allergies. Your little girl is so blessed to have you as her mother, you seem very much in tune to her needs!

  36. Jessica
    September 19, 2011 | 1:49 pm

    We don’t have any allergies in our house but we are very anti HFCS. I check labels on everything before I buy it. I was shocked in the beginning to see how many labels it was on, foods you would never expect. There has been some talk about changing the label to read “corn sugar” instead of HFCS. Ridiculous.

  37. John
    September 19, 2011 | 2:13 pm

    Oh, Liz – I cannot imagine trying to tackle a fructose intolerance. Great on you for adjusting as well as you’ve done!

  38. Poppy
    September 19, 2011 | 3:30 pm

    I know how long you have been dealing with this, but it must be harder the older she gets because she is exposed to it so much more in the community/school/birthday parties and such. I think that is the sweetest picture ever.

  39. Hopes@Staying Afloat!
    September 19, 2011 | 5:17 pm

    I had no idea that someone could be allergic to fructose. Thank you for bringing awareness to this issue. I’m sorry that you have to go through trial and error to find which foods her sweet little system can handle. She is absolutely adorable!

  40. Betsy
    September 19, 2011 | 5:35 pm

    Can I just say that I HEAR you on this? Celiac and food allergies rule our lives.

    Want to hear the best part? My husband gave our kid an Eggo waffle two weeks ago. An EGGO. Which is made with WHEAT. We are just now finally coming out the other side from the consequences of that. Ugh.

  41. The Flying Chalupa
    September 19, 2011 | 5:40 pm

    How did I not know that she had a fructose intolerance? Man, that SUCKS! I know it’s so hard hearing your child’s in pain, but take solace in the fact that you are doing your best. It’s all you can do.

  42. Lori
    September 19, 2011 | 6:46 pm

    Not even birthday cake, cookies, or ice-cream? That’s gotta be hard. You are amazing though, always there to help her make good choices. Hope it somehow, someway gets easier as she gets older.

  43. Ado
    September 19, 2011 | 7:36 pm

    That’s got to be a hard one to stand back and watch as a parent. Really hard. Especially when her tummy is in pain. You should give yourself a big pat on the back for figuring out what is was when she was so young and making all of those not-so-simple changes in your lives. She’s lucky she has you!

  44. Julie
    September 19, 2011 | 7:59 pm

    Is there no way to invent a test strip that reacts to fructose? Someone needs to get on that QUICK.

    Is it something she might grow out of?

  45. Rach (DonutsMama)
    September 19, 2011 | 9:44 pm

    Wow. It makes me mad anyways that HFCS is in practically every single product. I didn’t realize that Maddie had this allergy. How did you figure it out? Brave little girl.

  46. Crafty Mummy
    September 19, 2011 | 10:21 pm

    Oh, Liz, not fun! For her or you guys. I read “Sweet Poison” recently and tried to cut out fructose. It is VERY hard! But to have no choice about cutting it out just blows my mind.

    • Liz
      September 20, 2011 | 5:49 pm

      Oh no! Another book to add to the list! Once people understand what HFCS (and other artificial sweeteners) does to their body, it tends to be a turning point. But still so many don’t understand how consuming fake sugar confuses your body!

  47. Kimberly
    September 19, 2011 | 10:27 pm

    Poor, sweet girl. This breaks my heart. There is so much of that in everyday foods that I’m sure this has to be so difficult.

  48. Jayme (RandomBlogette)
    September 20, 2011 | 8:25 am

    That has to be so hard especially since she is so young. It may start getting a little bit easier when she is older and understands a little more. When Paige was born she was diagnosed with PKU which is a metabolic disorder that makes her body unable to break down protein properly. Our biggest problem is that there are so many things out there that are sugar free. It is so hard to find non sugar-free puddings and jello. We also have to ask someone every time they try to give her something whether is is sugar-free or not. Aspartame can make her very ill or cause mental retardation. She has learned now to ask people if things are sugar-free and when they ask her why she says because I have PKU! We are lucky that her disorder is very mild. There are other forms where they can’t eat any protein. It is rough and I so understand.

  49. imperfectmomma
    September 20, 2011 | 8:27 am

    Poor thing :( hugs to you & Maddie. I cant imagine what you hafta go through

  50. Kir
    September 20, 2011 | 9:07 am

    I had no idea and I feel so bad for Maddie and for your family.
    I can’t imagine what you had to go through to have that diagnosed and then have to live daily with it, having her offered things that any adult would think a child would love to eat, as a treat. My eyes tear up just thinking about the “restriction” you have to have when it comes to feeding her.

    ((Hugs))

  51. Stefanie
    September 20, 2011 | 10:11 am

    I’m sure that has to be incredibly difficult. My daughter had an egg allergy, and it took many months of scary testing to figure out what was going on. She has since outgrown it, but it was hard to keep her away from one of her favorite foods! I can’t even imagine having to keep her away from so many. I hope it gets easier as she gets older.

    • Liz
      September 20, 2011 | 5:12 pm

      Thank goodness she grew out of it!

  52. julie gardner
    September 20, 2011 | 11:29 am

    Oh, I’m so sorry. I had no idea.

    I can only imagine the sinking-heart feeling that your baby girl may have been hurting without your knowledge.

    How sad for such a sweet little thing…

  53. Kristin @ What She Said
    September 20, 2011 | 12:58 pm

    “I’m worried my baby has had a belly ache more often than not during her 3 years on this Earth.”

    As a parent, this was a gut-wrenching statement to read. Lil’ Bit is still young and has shown no signs of food allergies yet, and I pray she never does. I’m so sorry this is your reality.

  54. Elena
    September 20, 2011 | 1:41 pm

    I always knew from you twitter bio and things you’d mention to me that you were anti-HFCS – but I never actually knew it was due to an allergy with Maddie. I can imagine this is so very tough – especially the parties and eating out part. Hopefully you have found some restaurants in your area that are Maddie-Safe! And hooray for those cookies that you found!

    • Liz
      September 20, 2011 | 5:13 pm

      Dude, you have NO idea how big a find those cookies were!

  55. BalancingMama (Julie)
    September 20, 2011 | 6:10 pm

    Wow, that must be so difficult! You are doing an awesome job, mama.

  56. Jessica
    September 20, 2011 | 7:48 pm

    So tough. Two of mine are allergic to dairy and that makes things so tough, I can’t imagine having to sort out fructose from everything.

  57. Greta @gfunkified
    September 20, 2011 | 8:34 pm

    That sounds just awful. I can’t even imagine. At least she’s able to tell you now what makes her sick, but yeah…that must be hard to hear all the time. :(

  58. Glamamom
    September 20, 2011 | 11:06 pm

    Yikes. I had no idea you guys were dealing with that. The positive is that you understand there’s a problem and what it is, while not always what foods cause it. A lot of kids go undiagnosed for quite some time. I’ve read about kids suffering from different problems that cause them to act out and their parents unknowingly thinking it was a discipline issue and punishing them. I can only imagine how hard it is to see your daughter in pain but you can help her through it and as she gets older I’m sure it will get easier. Can she grown out of it or is it for life?

  59. Amy
    September 21, 2011 | 1:30 am

    I didn’t realize how much HFCS really is in everything! I don’t have personal experience with food allergies, but I have friends who do, and it really is a ton of work! (but you know that, obviously.)

  60. Charlotte
    September 21, 2011 | 2:28 pm

    I’m so sorry to hear that you are dealing with this–that has to be extremely difficult on all involved. But know that you are doing all that you can to make sure Maddie’s diet is a healthy one, complete with all the nutrients and proteins.

    Recently I was dealing with various food intolerances, too, and though I’m slowly reintegrating problem foods back in, the stress that went along with that (not to mention the anxiety of what foods are safe to eat) is something I hope never to have to experience again. I’m hoping this is something that gets easier over time.

    My thoughts go out to you all. XOXO

  61. Anna ~ Random Handprints
    September 21, 2011 | 9:17 pm

    dietary restrictions can play such a big part in life – my husband and i were introduced on a blind date by mutal friends who said we were perfect for each other b/c we both don’t eat dairy. it’s great to be married to a guy who is always game for a cheeseless pizza :)

  62. Melissa
    September 23, 2011 | 11:13 am

    I’m so sorry Liz that you and your little have to deal with this on a daily basis. I know that as a Mom, it pains you to wonder how much pain she has had w/o knowing b/c she was unable to verbalize it to you.

    Thanks so much for sharing her story and for increasing awareness. I would really love to do a column on this topic and interview you about your experiences. XO

  63. Lady Jennie
    September 25, 2011 | 1:14 pm

    I know how you feel to a small degree (I have gluten intolerance). But so far so good with my kids not inheriting it because it is infinitely harder to have our child suffer than ourselves.

  64. Yuliya
    September 28, 2011 | 3:26 pm

    Just catching up and wanted to say what a bummer for you guys. I don’t eat gluten and am slowly cutting out dairy so I know how it can be. Good luck and hang in there.

  65. CK
    September 28, 2011 | 3:57 pm

    OH, man! This is such a tough one! My son is so picky and I have a hard enough time trying to figure out what he can eat when we are out. But the repercussions of me choosing something he doesn’t like is just that he won’t eat it- not that he will and then have a belly ache. That is a really tough challenge and it is awesome that you have come this far. Good luck finding all the right foods! I still remember those gummy candies you recommended months ago. Now it makes a little more sense why finding those types of foods are so important for you guys!

  66. Hazel
    October 9, 2011 | 1:31 pm

    Oh that sounds rough. My 2.5 yr old is intolerant to bananas, as well as allergic to peanuts, so I have had to be careful about what he eats as well. It has been a lot less trouble than what you have been through with your little girl. I hope it gets easier.

  67. Sandra
    January 29, 2012 | 4:08 pm

    Hi, my husband has Hereditary Fructose Intolerance, you do learn to live with it, we eat out, go on holidays, I agree birthday cakes are a pain, we’ve had Cheese Scone cakes, Pork Pie cakes and what ever else we can come up with. Luckily he loves his food so doesn’t get bored with it. He eats very plain food, and can’t tolerant any artificial sweeteners, so we have to check the ingredients when buying anything new. It will get easier for you and your daughter, you do learn to live with it. Good Luck.

    • Liz
      January 30, 2012 | 8:18 am

      Thanks so much for your kind words and support. She’s 3.5 now and it gets easier and harder all at the same time. This is our first year of preschool, and I know that for a while at least, all the treats that are used as rewards, school parties and birthdays are going to be the biggest hurdle.

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